BC Cancer Agency www.bccancer.bc.ca

Spring 08 A newsletter for brain tumour patients and their families

My Story Hurry Up and Wait By Jared Brick

Eyes try to open after surgery Radiation, the last step in treatment. Jared Brick is a student at Douglas College a strange goop in them prevents this. A clear plastic mask who will complete his associate science I try to yell I’m awake, to strap me to the table, degree after this semester. He hopes to but the ventilator down my throat stops me. straight out of a medieval torture room. transfer to UBC in September to begin a I reach up to pull it out A bed, biochemistry degree. Jared was diagnosed but my hands are tied, cold and hard. in 2000 with a germinoma tumour of the to stop me from doing just this. An apron, pineal gland and underwent two brain Eventually, a nurse notices. lead, so stray radiation does no damage. surgeries, chemotherapy and radiation My hands untied I am fastened to the table with my mask. therapy. This poem first appeared inPearls , The ventilator removed “Lie still, this will only take a minute” they a student anthology published by The substance wiped out of my eyes tell me. Douglas College I lie on the bed Technicians leave the room, waiting for the doctor to tell me and I hear nothing as the machine works. I can go home A technician enters the room. until treatment has to continue. “You are finished” they tell me. Treatment is over. Chemotherapy, the second step in Refined by the trip through hell, treatment. new appreciations for life arise. Nurse pokes me with needles A strength within discovered, until she strikes a vein. to carry me through future struggles. Sitting and waiting The waiting over, while poison courses through my veins. No more restraints, They call it chemotherapy No more poison, and tell me it is making me better. No more radiation. I watch my hair fall out. Appreciative to those before me, I roll over in bed and throw up. Who didn’t make it. I am too tired to sit. Their passing was not in vain. Better, I think, They made it so that I could survive. Yeah right. Thankful. Jared Brick and friend

This newsletter is published through the generous support of Bernie & Lee Simpson, the Hershey & Yvette Porte Neuro-oncology Endowment Fund and Schering-Plough Canada. For more information on how you can support enhanced patient care, patient information and brain tumour research, please contact Sharon Kennedy at the BC Cancer Foundation, 604-877-6160 or 1-888-906-2873 or [email protected] Wellness Life after treatment: Monitoring your condition

fter you finish your Selected focal signs and symptoms of brain tumours treatment, you will continue Ato have regular assessments, Location of tumour Potential focal signs and symptoms including a CT or MRI to ensure that Frontal lobe Changes in behaviour and personality; difficulty with problem the tumour is not becoming active solving, judgment and insight; problems with speech and and a general physical examination to word-finding; arm or leg weakness on one side of the body monitor for symptoms and treatment Parietal lobe Changes in sensation on one side of the body; inability to side effects. When tumours become recognize numbers or letters; difficulty with dressing active after treatment, they usually do Temporal lobe Seizures; memory problems; visual problems; speech and so in their original location. As a result, language problems signs of recurrence are often similar to Occipital lobe Visual problems, especially loss of peripheral vision on one side the original signs and symptoms of the Cerebellum Problems with balance, coordination and eye movements tumour. Although primary brain tumours sometimes regrow in a new area of the brain, they rarely spread outside the brain. Growing tumours create increased slowness. Radiation to the brain can also In 30-70% of people, a seizure is the pressure within the brain, either because cause changes in hormone levels, leading first sign of a brain tumour. If you have of inflammation and swelling around the to decreased energy levels, weight gain, had a seizure in the past, you may be tumour, or through the solid mass itself. changes in hair and skin, and alteration in on medication to prevent seizures and A protective rigid skull encompasses brain sexual function. Depression may also occur, this will reduce your risk of having a tissue, blood and the cerebrospinal fluid and unfortunately often goes unrecognized generalized seizure (that is, one causing which bathes the brain and spinal cord. or untreated in cancer patients. loss of consciousness) in the future. This material fills the skull so completely Talk to your health care team, including However, even with seizure medications that there is little room for anything else. your family doctor, for advice about some people continue to have milder Nonetheless, a tumour may grow very diagnosing and treating these conditions forms of seizures, termed partial or focal slowly in the brain for a time without and about the onset of any signs suggesting seizures. Your lifetime risk of all types of causing symptoms, while a rapidly growing that the tumour has become active again. seizures, including generalized seizures, one may quickly cause signs of pressure. will always be higher than for someone At your follow-up visits, your doctor or without a brain tumour. This is because nurse may use a light to inspect the back Signs of increased pressure there is abnormal tissue (for example, a of your eye for signs of pressure on the in the brain scar or area of tumour cells) in the brain optic nerve. • Headache, especially occurring which causes disruption of electrical Fatigue may continue for months in the morning or awakening a communication between brain cells. after treatment, especially if radiation person at night Seizure activity should be reported, but it was given. Long-term side effects of • Nausea and vomiting does not necessarily mean that a tumour treatment include changes in memory and • Double vision or transient is growing. thinking abilities. These side effects may darkening of vision “Focal signs” of brain tumour activity impact your ability to return to work or • New onset of confusion are related to the location of the tumour school. Sometimes medications can help • Weakness on one side of the body within the brain. to alleviate problems related to mental

Editions of Headlines are also available as a pdf download at: www.bccancer.bc.ca/HPI/CancerManagementGuidelines/NeuroOncology/PatientResources.htm If you would like to submit an article, ask a question, or serve on our patient and family advisory board, please contact Rosemary Cashman at [email protected] or 604 877 6072 (phone) 604 877 6215 (fax). All content by Rosemary Cashman unless otherwise specified. Resource Guide

Resource Guide 100 questions and answers about cancer My voice: advance care plan / Fraser Health symptoms and cancer treatment side Authority – Surrey, BC: FHA, 2006. Call Number: By Diana Hall, Librarian, Vancouver Centre. effects / Kelvin, Joanne Frankel; Tyson, Leslie W84 F841 2006. Internet: www.fraserhealth. To borrow books and videos, please call the B – Sudbury, MA: Jones and Bartlett Publishers, ca/HealthInfo/AdvanceCarePlanning/Default. BCCA Library at 604.675.8001 or toll free 2005. Call Number: QZ201 K29 2005 htm & www.fraserhealth.ca/HealthInfo/ 1.888.675.8001, local 8001 or request items via AdvanceCarePlanning/Workbook.htm the Catalogue at www.bccancer.bc.ca/Library. American Cancer Society’s guide to complementary and alternative cancer Relaxation tapes and CD’s [titles & About brain tumours methods, 2nd ed. / American Cancer Society descriptions] / BC Cancer Agency. Patient – Atlanta, GA: American Cancer Society, 2007. and Family Counselling Services – Vancouver, Brain tumors: leaving the garden of Eden: Call Number: QZ266 A5138 BC: BCCA. PFCS, 2007. Call Number: QZ266 a survival guide to diagnosis, learning the B364 2007. Internet: www.bccancer.bc.ca/ppi/ basics, getting organized and finding your Cancer is a word, not a sentence: a copingwithcancer/emotional/resources.htm medical team / Zeltzer, Paul M – Encino, CA: practical guide to help you through the Shilysca Press, 2004. Call Number: WL358 Z53 first few weeks / Buckman, Robert – Toronto, Resource guide for Chinese cancer patients 2004 ON: Key Porter Books, 2006. Call Number: (Lower Mainland) / Kwong, Sandy; BC Cancer QZ201 B925c 2006 Agency. Patient and Family Counselling Services Brain tumour patient resource handbook: – Vancouver, BC: BCCA, 2007. Call Number: adult version, 5th ed. / Brain Tumour Chasing rainbows: young adults living QZ201 K98 2007 Internet:www.bccancer.bc.ca/ Foundation of Canada – London, ON: BTFC, with cancer / Taylor, Pat – Vancouver, BC: PPI/copingwithcancer/practical/default.htm 2005. Call Number: WL358 B814b 2005 Chasing Rainbows Productions, 2006. DVD. Internet: www.braintumour.ca/braintumour.nsf/ Call Number: QZ200 C487 2006. Visions for cancer recovery: a guided eng/NewHandbook_getInfo Crazy sexy cancer tips / Carr, Kris; Crow, visualization and health meditation / Hallman, Mary – Crown Sign Productions, 2004. Primer of brain tumors: a patient’s Sheryl – Guilford, CT: Skirt! 2007. Call Number: DVD. Call Number: QZ266 H191 2004 reference manual, 8th ed. / American Brain QZ201 C311 2007 Tumor Association – Des Plaines, IL: ABTA, Eating well with Canada’s food guide / What you really need to know about 2004. Call Number: WL358 P953 2004. Internet: Canada. Health Canada – Ottawa, ON: Ministry cancer: a comprehensive guide for patients www.abta.org/index.cfm?contentid=170 of Supply and Services Canada, 2007. Internet: and their families, 2nd ed. / Buckman, Robert – Toronto, ON: Key Porter Books, 2006. Resource directory: a guide for patients, www.hc-sc.gc.ca/fn-an/food-guide-aliment/ Call Number: QZ201 B925 2006 families and health professionals / National fg_rainbow-arc_en_ciel_ga_e.html Brain Tumor Foundation – San Francisco, CA: Exercising your right to decide: an Caregivers and Families NBTF, 2007. Call Number: WL22 N277r 2007. introduction to advance health care Internet: www.braintumor.org/NBTFPublications/ planning / Vancouver Island Health Authority – 100 questions and answers about caring Victoria, BC: Vancouver Island Health Authority for family or friends with cancer, 1st ed. / Personal stories (B.C.) 2006. DVD. Call Number: W85.5 E96 2006 Rose, Susannah; Hara, Richard – Sudbury, MA: Jones and Bartlett Publishers, 2005. Chasing daylight: how my forthcoming Financial information for cancer patients Call Number: QZ201 R797 2005 death transformed my life: a final account / / BC Cancer Agency. Patient and Family O’Kelly, Eugene; Postman, Andrew – New York, Counselling Services – Vancouver, BC: BCCA. Everyone’s guide to cancer supportive NY: McGraw-Hill, 2008. Call Number: BF789 D4 PFCS, 2007 Internet: www.bccancer.bc.ca/PPI/ care: a comprehensive handbook for O41 2008 copingwithcancer/practical/default.htm patients and their families, rev. and updated / Rosenbaum, Ernest H; Rosenbaum, Isadora – From top to bottom...and back! / Hicks, From cancer patient to cancer survivor: Kansas City, MO: Andrews McMeel Publishing, Peter – Victoria, BC: Peter Hicks Productions, lost in transition / Hewitt, Maria; Greenfield, 2005. Call Number: QZ201 R813 2005 2005. Call Number: WL358 H631 2005 Sheldon; Stovall, Ellen; National Cancer Reaching out to your children when cancer I had brain surgery, what’s your excuse? : Policy Board (U.S.). Committee on Cancer comes to your family: a guide for parents An illustrated memoir / Becker, Suzy – Survivorship: Improving Care and Quality of Life / Slakov, June – Vancouver, BC: BC Cancer New York, NY: Workman Publishing, 2005. – Washington, DC: National Academies Press, Agency. Multi-Media Services, 2007. Call Number: WL358 B396 2005 2005. Call Number: QZ266 F931 2005. Internet: www.nap.edu/catalog.php?record_id=11468#toc Call Number: QZ201 S631r 2007 Living with cancer Living with hope / University of Saskatchewan. When someone you love has advanced 100 questions and answers about cancer Division of Media and Technology – Saskatoon: cancer: support for caregivers / U.S. National and fertility / Oktay, Kutluk H; Beck, Lindsay University of Saskatchewan, 2004. DVD. Cancer Institute – Bethesda, MD: NCI, 2005. Nohr; Reinecke, Joyce Dillon – Boston, MA: Call Number: QZ266 L785 2004 Call Number: QZ201 U58w 2005. Internet: www.cancer.gov/cancertopics/When-Someone- Jones and Bartlett Publishers, 2008. Mayo Clinic book of alternative medicine You-Love-Has-Advanced-Cancer/allpages Call Number: QZ200 O41 2008 / Mayo Clinic – New York, NY: Time Inc. 2007. Call Number: WB100 M474 2007 My husband was diagnosed with a friends it looked a lot like I put my life on brain tumour in the fall of 2006. He Question hold. I did in a lot of ways, but not in every Qwent through treatment and was way. I still made time for myself, and John well for about 3 months, but had to go + answer really enjoyed having time for himself too. back on chemo again last year. He is not I worked, but less, and gave up one of working now, and I’m working full-time. I remember when my husband my businesses. My boss is very sympathetic, but I wonder John was first diagnosed with his I’m not saying, put your life on hold if he would be if I didn’t show up for work Abrain tumour, it was Valentine’s and you won’t feel angry or frustrated. since there isn’t anyone to replace me. day 2005, our anniversary. I was only And I’m not saying make time for yourself We also have 2 kids in high school. Our 30. We knew instantly that things had and you won’t feel angry or frustrated. daughter has taken her dad’s diagnosis changed. It was a shock, but we knew Getting angry or frustrated still happened, very hard and seems to take everything that we had to accept this diagnosis. It for both John and I. Most of us feel angry out on me. I feel like I’m in a pressure wasn’t just John’s diagnosis, it was mine or frustrated with or without cancer. For cooker all the time, worrying about money, too. That didn’t mean that we were going the most part we were a regular married the kids, my husband. People tell me to to be experiencing the same thing, but it couple with all the ups and downs. We take time for myself, but that doesn’t help did mean that we were going through this just knew that we had a lot less time than – I just feel guilty for not doing anything together. It was crucial to our happiness other couples to work out our issues. right. I sometimes feel like I’ll snap, even to understand and accept that yes, John is There are a lot of really practical though I know I can’t. very likely going to die from this tumour things that John and I did that helped us in some short number of years. We knew immeasurably, like marriage counseling too that anything can happen – I could and grief/loss counseling, support groups, die first from something else, John could meditation, travel, and just spending a lot also die from something else, he could of time together on things that were fun experience a miracle cure, he could have for us, no matter how mundane. But I think a long remission. But the odds were life the thing that really made this diagnosis expectancy shortened to a few years. bearable was our feeling of gratitude that I had to make some choices. The we had so much time to say goodbye, to actual details of the choices weren’t that be together, to grow together, and to walk important (choices about working, how on a spiritual journey together. So many much to work, making time for myself), people don’t get to do all that. but my commitment to those choices was John Wolford (1971-2007) my sanity. That’s what I needed to do to be by Dhalie Patara Wolford and Dhalie Patara Wolford okay with the situation. To my family and

Vancouver 2008 Spring Sprint! Be one of the thousands of people walking, running and sprinting in support of those affected by a brain tumour this Sprint. Vancouver’s event will be held on Saturday, May 3rd, 2008 and is aiming to raise $43,500. Help the Brain Tumour Foundation of Canada fund research and provide support. Imagine a cure! www.springsprint.ca Saturday, May 3rd, 2008 Location: Deer Lake Park, Shadbolt Centre Distance: 5 km route Check in: 10 am Start: 11 am Rain or Shine! Please contact the coordinator if you would to help with this event: Yaron Butterfield [email protected] a 604 707 5900 x 5446 Directions from Vancouver (from East Hastings) » Take Trans Canada Highway 1 east – go 6.0 km » Take ramp RIGHT onto Sprott St – go 0.5 km » Turn LEFT on Norland Ave – go 1.1. km » Turn LEFT on Deer Lake Ave – go 0.3 km » Arrive at 6430 Deer Lake Ave, Burnaby